There are two words that I live by these days: “Determination” and “Independence”. When I was diagnosed with hypoparathyroidism 3 years ago I was more determined than ever to maintain my independence.
I had my thyroidectomy October 14th, 2011 and I had no prior knowledge of hypopara or really any of the risks of having the surgery. When I was discharged 2 days later all I was told was if my face around my mouth went numb to come back right away, but still was told why. I went home and started the healing process (it’s not nice having your neck sliced open).
I eventually went back to work which was somewhat easy because I had a desk job and an amazing boss and co-workers. However, I started to notice that my arms and legs always felt like they were asleep – they were always tingling – but none of the doctors ever mentioned it so I kept pushing on.
At my discharge they had given me Tums and told me to eat 4 of them a day, again with no explanation. I did as I was told and went to my follow-up like planned. I was a mess when I went in there, so much so that I was told I should start an anti-anxiety medicine but that I was otherwise fine and there weren’t follow-up labs at that time and that I could go home. I made another appointment with a new endocrinologist and went back home. The days blended into the nights and I could barley function in my daily life. I was a mess.
Thanksgiving came and I was no better, in fact I was worse. I was supposed to go to my partners family’s dinner and I begged and begged to stay home but everyone thought it would do me good to get out. So I went.
I remember lying in the basement crying and listing to everyone having fun upstairs so I wiped my tears and tried to go enjoy myself. In the middle of dinner everything for me went black. Apparently, I flipped away from the table, said some things, and just left, leaving my kids and partner behind. The following days were a blur and plenty of people were upset with me.
I kept going. I kept pushing. Harder and harder, until I woke up one day and my only thought was that I was going to kill myself or I was going to find help. I decided to take the train into downtown to the hospital. After hours of waiting because I couldn’t explain to them what was wrong with me, they finally called me back only to tell me “we can give you pain meds and send you on your way” and suggested I just follow-up with my doctor on Monday. I grabbed the side of the bed and refused his pain meds and said I wasn’t leaving because, “I would die!” Thankfully another doctor saw my chart and read that I had just had a total thyroidectomy. Within seconds I was in a room full of people doing a million different things to me. They found my calcium was at “deadly low” levels and my heart was in distress. Days later when I was able to talk to a doctor, he told me he had no idea how I survived in that shape as long as I had. Determination.
I wonder how long I can hold on to my independence though? I see some of the simpler things getting harder for me. I think so often that if I could just move home and live with my mom; she would take such great care of me. It’s very tempting, but I am still determined not to let hypopara take my independence. Not yet.
I recently traveled home to see my mom and go to a benefit for a dear friend who is suffering under the weight of ALS. This trip home was particularly hard for me on so many levels. I left Minneapolis on a Friday, and I had been sick and struggling with my calcium the whole week up until I left. Worse, I wasn’t thinking when I packed to go back home to Minneapolis and just threw all my meds into my suitcase and headed to the airport. I checked my bags but then missed 2 planes due to delays which meant my meds (in my luggage) were now in another state than me! I was facing a possible 8 hours in an airport with no meds and I could feel my calcium getting lower – I could feel a calcium CRASH coming on. I even managed to lose my ticket! But in all my digging around, I found all the packets of Cal-EZ I had stashed for myself when I was well! Sure, determination and independence are important words in my story as a hypopara patient, but for a chronic illness so is planning.
Extremes become average in this life.
“Never go backward. Attempt, and do it with all your might. Determination is power”. – Charles Simmons
Disclaimer: I have received complimentary Cal-EZ as a thank you for sharing my story. All opinions about Cal-EZ are my own.
When hypoparathyroidism patients or family members make a purchase, 10% of the total purchase price will go towards an unrestricted grant to the Hypoparathyroidism Association, Inc. Click the image to the right to get started!